Happy Breastfeeding Awareness Month

I wasn't able to breast feed the girls because of a few reasons. One reason was Abigail had difficulty learning to feed, so she had to have a feeding tube placed. Elizabeth dropped her heart rate (a preemie thing) when she drank, so it was safer to monitor her feeding with a bottle. 

I might not have breastfeed them, but I sure did master the art of pumping! 

I pumped until the girls were a little older than 8 months. I would have liked to go longer, but trying to feed 2 babies became difficult. 

I am very proud of my pumping though. During the NICU days all I could really do for them was pump.  One thing that can happen to premature babies is something called Necrotizing Enterocolitis or NEC. It is extremely dangerous and it can be life threatening. NEC is an infection that causes destruction of the bowel.  The one thing that has proven to help prevent it is breast milk. Liquid Gold! Once the doctors gave me that info my number one goal became to pump like crazy. 

 I had a pump that I kept at the Ronald McDonald House and then the hospital let me use one while I was there. The NICU nurses love breast milk and often the very first thing they would say to me before even hello was, " Do you have any fresh?" And most of the time I did. 

Looking back I am proud of myself. Pumping can be hard work. I am happy to say that I feed my twins the entire time they were in the NICU. They both never got NEC and I know in my heart it is because of the breast milk. 

To any NICU moms out there I really recommend trying to pump. I know it is hard work and it is difficult with everything that is going on and all the emotions you are experiencing, but it truly can make a difference. 

This makes me laugh. So true... :)

Doctors and More Doctors

These are the 8 doctors that follow my girls regularly.

Pediatric Eye doctor

Audiologist

Pulmonolgist 

Pediatrician

ENT doctor

Orthopedic

Physical Medicine doctor

Neurologist 

And Abigail will be seeing an Endocrinologist and possibly an Infectious Disease doctor soon. 

When the girls were in the NICU no one really prepared me for the amount of doctors appointments that would be in our future.  I don't mind the appointments, but there can be a lot of paperwork and things to remember.  

For some reason my brain has developed some type of super memory power because I can  tell you anything you need to know about their medical history starting from day one. This isn't true in other areas of my life. I am the type of person that usually has to write myself a note to remember. I can remember everything, but I needed a way to organize all the paperwork I received after each appointment. 

I have always liked to be organized so I now keep a binder with all of the girls important documentation. I totally recommend this is other NICU/preemie moms. The amount of paperwork you will get will totally surprise you. I have dividers in my binder to help me stay organized. Some of my dividers include pulmonary, GI, and Ortho.  This seems to be the only way I can keep track of all of their records and documentation. I even have a separate binder for their physical/occupational therapy documentation. 

For their first few doctors appointments I brought the binder with me so I could refer back to it if I needed it for anything. I don't bring it with me anymore,  but after every appointment I file away their appointment documents in the binder. 

I totally recommend NICU moms to get yourself a binder or develop your own method of organization because there will be a ton of doctors appointments and documents in your future. 

What a day...

Yesterday was a crazy day.

Abigail's endoscopy showed that she still has pretty bad thrush in her esophagus, despite the 21 day anti-fungal meds she was previously on.

Her doctor is very concerned and will be consulting with an endocrinologist and an infectious disease doctor. They took more biopsy and tomorrow she will have to get a ton of blood work done. She will also be on another 21 day round of anti fungal meds, but this time it is a lot higher dose. 

Her doctor gave me a long lists of things that could be causing her thrush and some are concerning. Doctors love to scare you to death. 

Hopefully we will rule some of the things out once her biopsies and  blood work come back. 

I am happy to report that her lungs did great yesterday despite the bad news. She didn't need any oxygen and she didn't have to stay the night. This was great news!

As if the day wasn't already difficult enough, I got contacted by Elizabeth's physical therapist while Abigail was in the recovery room. Her therapist believed that Elizabeth had a seizure during therapy yesterday. This would be her very first seizure, but I have always known that people with CP have an increase risk of having seizures.

We contacted her old neurosurgeon's office and they instructed us to bring her in to the emergency room. Once I got home with Abigail, I turned right back around and headed for Baltimore with Elizabeth. If your keeping track- that makes the second trip to Baltimore in one day. 

The ER docs thought that she looked clinically great and referred us to the seizure clinic at Hopkins. They did believe that the description of what Elizabeth experienced did indeed sound like she had a seizure. 

This morning I called the clinic and schedule an appointment with the seziure clinic at Hopkins. 

It was a long day yesterday. I left at 5 AM and didn't finally get home until 9 PM. Even though it was a long day, both of my girls were home snug in their beds at the end of the day and in otherwise good health. 

I'll keep everyone updated as I get more info. As always thanks for all of the love, support, and prayers.

Family Vacation

We just got back from a great family vacation. We enjoyed The Great Wolf Lodge and Busch Gardens. It was wonderful weekend full of fun in the water, quality time with grandparents, and happy memories. 

I was really impressed with the Great Wolf Lodge. We will be going back again for sure. I highly recommend it! It's a great family place. Elizabeth and Abigail even went on their very first water slide. 

Playing in the arcade

At Busch Gardens the girls enjoyed playing in the Seasame Street area. We even got to watch the Elmo show! We also on the train twice. Choo Choo!